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The lack of attention that Parkinson’s receives has led to widespread ignorance about the condition in Nepal

Banita Khanal

Why I launched Nepal’s first Parkinson’s support group

In my country

Author: Banita KhanalPublished: 9 March 2017

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Diagnosed with Parkinson’s at 26, Banita Khanal was shocked to discover that there were no Parkinson’s support groups in her country, Nepal. Faced with poor economic resources, widespread ignorance of the condition and a blockade on medication from the Indian government, Banita recalls how she overcame these tough challenges to take matters into her own hands – and set up Nepal’s first ever Parkinson’s organisation

I was diagnosed with Parkinson’s disease at the age of 26, however I first noticed symptoms while studying for my exams at 18. I found that I was struggling to hold a pen properly but initially put these difficulties down to exam-related anxiety. It wasn’t until I was working towards my bachelor degree that I found myself having similar problems. I started having difficulty when moving and friends remarked about how rigid my hands were when I walked. Despite the early signs, it was still years before I was diagnosed with Parkinson’s.

After my initial diagnosis I began to research a great deal about Parkinson’s on the internet. While I was greatly encouraged by the worldwide support that was available for those with the condition, I was somewhat disappointed to find there were no support groups in Nepal. So, I decided that I needed to start my own support group and wrote an article about my experience in a national newspaper, in the hope of meeting others living with the condition.

Although initially my article did not generate much interest, last year I was approached by a medical officer, on Facebook, who wanted to meet with me. We met up and she told me she was interested in setting up a non-profit Parkinson’s support group, here in Nepal.

“Often when I tell people about my Parkinson’s their first reply is ‘what’s that?’”

It was in April last year, timing nicely with Parkinson’s awareness month, that we organised an event for those that were interested in the condition. We wanted our event to appeal to those living with Parkinson’s, along with carers and medical professionals. The event, which was advertised on social media, was a success with around 40 people attending.

Unfortunately, despite interest from those within the Parkinson’s community, we have faced great difficulties when trying to register as an official organisation. Nonetheless, we have founded an informal group named ‘Parkinson’s Support Nepal’ (PSN). At this stage our primary goal is to raise as much awareness as possible about Parkinson’s in Nepal.

Beating the blockade

Soon after establishing ourselves as a support group we had our first success. The Indian government has imposed a blockade on Nepal, which affected the Parkinson’s community greatly as most medication is imported from India. We were contacted with a man who was worried as his medication was running out of stock. Using our network we managed to have some medication delivered to him. This was a great, early success for our group. We were particular delighted as the underdevelopment of Nepal makes it hard to run a successful support group.

As an organisation we believe our biggest challenge will be raising awareness about Parkinson’s in Nepal. Nepal is a country with poor economic resources and we find the medical industry to be particularly stretched. We firmly believe that by developing awareness about the condition we can secure far better funding to help fight the cause. I am currently working for a tourism magazine and published a small article about Parkinson’s. It is with small victories like these that we hope to move towards our aim.

‘Parkinson’s, what is that?’

The lack of attention that Parkinson’s receives has led to widespread ignorance about the condition in Nepal. Often when I tell people about my Parkinson’s their first reply is ‘what’s that?’ They are then surprised to discover that I am a young person that has such difficulty moving, this lack of knowledge is the responsibility of both the government and the media who have failed to educate the public. We know that our government set aside a small amount of funding for Parkinson’s, however we have failed to find out where this goes.

The cycle of non-education that exists in Nepal leaves the PSN in a ‘catch 22’ situation. Without awareness in Nepal it is difficult to raise funds, however without the funds it is also hard to raise awareness.

“Nepal is a country with poor economic resources and the medical industry is particularly stretched”

This lack of awareness also makes it difficult for those living with Parkinson’s to receive the assistance that they need. I recently applied for a disability card and was disappointed to discover that the office that distributes these cards was not aware that Parkinson’s existed. The government in Nepal has a quota for jobs for people with disabilities, unfortunately people like myself will find it hard to get these jobs without a significant increase in awareness.

At the PSN, to help further our cause, we would love to collaborate with an international Parkinson’s organisation. I would hope that a partnership with such a company would lead to the creation of jobs for those of us who are living with the condition.

‘A cause for worry’

The current healthcare system in Nepal is a cause for worry for those of us who are living with Parkinson’s. It took 10 years for my condition to be diagnosed and that was only when I travelled to India.

The hospitals in Nepal are not advanced enough to deal with Parkinson’s. To this date there has only been one successful deep brain surgery that has been carried out, and this was with the help of a Japanese doctor. If Parkinson’s care in Nepal is to improve, then there will have to be a significant amount of investment in hospitals. At the moment the system is stretched and it is very difficult to get an appointment with a neurologist. In the future I would like to see far more investment in Nepal’s infrastructure.

Here at the PSN we will work hard to continue the fight against Parkinson’s, however with no funding it is a great challenge for us. For now we must continue to try and educate, while encouraging the government to invest in the countries medical infrastructure.

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The lack of attention that Parkinson’s receives has led to widespread ignorance about the condition in Nepal

Banita Khanal

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Comments

http://Parkinsonspeople.org.uk Andy Butler

great Article.

mjc0827

Best of luck to you and your group! Let us know what resources you need to keep this effort moving forward.

lee Kieft

I work as a Parkinson’s Nurse Specialist and appreciate the importance of patient and carer group support. We have local group in London although poorly attended. How many attend your group and how frequent you are meeting. Do you get any global support?

Christa Plasschaert

I work as a parkinson’s nurse specialist in the Netherlands and I was born and raised in Nepal. The last few monthes I have been thinking about Nepal and Parkinson’s disease and if I could be of any help. I didnt realy know where to start, so I’m glad to read this blog! Could I help you in some way? In de Netherlands we have one of the best support systems for Parkinsons disease in the world. You can read that at http://www.parkinsonnet.info. I would like to hear from you!

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Carefully selected news stories from the international Parkinson's community.

3 weeks ago

Excess calcium in brain could cause Parkinson’s

Researchers at the University of Cambridge, UK, have discovered that excess levels of calcium in brain cells may lead to the formation of the toxic clusters that signify Parkinson’s disease. The findings, reported in the journal ‘Nature Communications’, show that calcium can influence the interaction between small membranous structures inside nerve endings, which are important for neuronal signaling in the brain, and alpha-synuclein – the protein associated with Parkinson’s disease. Dr Janin Lautenschläger, the paper’s first author, said: “This is the first time we’ve seen that calcium influences the way alpha-synuclein interacts with synaptic vesicles. We think that alpha-synuclein is almost like a calcium sensor. In the presence of calcium, it changes its structure and how it interacts with its environment, which is likely very important for its normal function.”

Jewish people with Crohn’s disease more likely to carry LRRK2 gene mutation

A scientific study has concluded that there may be a link between Parkinson’s and Crohn’s disease within the Ashkenazi Jewish community. The study’s findings, which were published in the journal ‘Science Translational Medicine’, has found that members of the population with Crohn’s disease are more likely to carry the LRRK2 mutation which is a significant cause of Parkinson’s. Lead researcher Dr Inga Peter, professor of genetics and genomic sciences at the Icahn School of Medicine, New York, US, said: “Crohn’s disease is a complex disorder with multiple genes and environmental factors involved, which disproportionately affects individuals of Ashkenazi Jewish ancestry. “The presence of shared LRRK2 mutations in patients with Crohn’s disease and Parkinson’s disease provides refined insight into disease mechanisms and may have major implications for the treatment of these two seemingly unrelated diseases.”

Could caffeine in the blood help diagnose Parkinson’s?

Blood caffeine levels could be promising diagnostic biomarkers for early-stage Parkinson’s, Japanese researchers reported in the journal ‘Neurology’ earlier this month. The study found that people with Parkinson’s had lower levels of caffeine and caffeine metabolites in their blood than people without the disease, at the same consumption rate. Caffeine concentrations also were decreased in Parkinson’s patients with motor fluctuations than in those without Parkinson’s. However, patients in more severe disease stages did not have lower caffeine levels. The study’s authors, Dr David Munoz, University of Toronto, and Dr Shinsuke Fujioka, Fukuoka University, suggested that the “decrease in caffeine metabolites occurs from the earliest stages of Parkinson’s.” They added: “If a future study were to demonstrate similar decreases in caffeine in untreated patients with Parkinson’s […] the implications of the current study would take enormous importance.”